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Wishing That Remission Meant an End of Treatment

Wishing That Remission Meant an End of Treatment

I get weirdly jealous of those, who had often gone through horrific treatment, who get the all clear which means an end of treatment. I want that. And I know it sounds completely mental. Why would I wish for a transplant? For intravenous chemotherapy? For this really invasive treatment? Well. Because it would mean an end to it.

11.5 years of treatment takes its toll

Living in a medically managed remission is a funny place to be. Limbo land. I’m only in remission because of the oral chemo that I take every day. And no, the impact (in terms of side effects or being an inpatient) isn’t as great as intensive treatment. But the impact of living with it every day… with no end in sight… with having an ‘easy’ or a ‘better’ cancer is huge. And trying to get people to understand this, even those who have had cancer, can be challenging. They don’t see the problem with taking a pill every day for the rest of your life.  They don’t see the problem with having the hospital dictate so much. They don’t see the problem with being in clinic all the time, trying to find a treatment that works, and getting on with life.  They don’t see how it really is. Probably because I smile and say ‘I’m ok’. Even when I’m not.

And would I want to be without cancer? Yes. Would I want to be told that remission meant that I could move on with my life? Yes. Would I want it so that being in remission didn’t really mean anything as it doesn’t mean an end of treatment? Yes. 11 and a half years of treatment is taking its toll.

The flip side

But then on the flip side… I always argue both sides. With the rare exception, I always think of the other side, voice the other side. Maybe I should have been a lawyer… I am still here with basically only one side effect from treatment. Yes. It’s a very challenging one. One I sort of manage. But compared to some I know, I have no right to whine. I have my mobility. I have a good immune system. I am able to carry on with life. Yes, a restricted one compared to my friends and family. But compared to some I know who have had the ‘normal,’ more aggressive treatment, my life is so much better than theirs in many ways. Although, I know some who have had a transplant and they are doing better than me. I suppose that, really, I need to stop comparing myself to others and how they are. To fully allow how I feel for me. Because at the end of the day, the only impact that how I feel has is on me.

So, do I feel jealous of others when they finish treatment, get the all clear, and can begin to say goodbye to cancer? Yes. Do I wish that I could do that? Yes. Do I wish that I didn’t have to carry around with me a ‘please offer me a seat’ and a ‘Cancer On Board’ badge so I can get a seat on public transport? Yes. It is slightly ridiculous that I feel like this? Probably yes. But I do.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ronni Gordon
    11 months ago

    Hi Katie, I’m really sorry that you go through so much. Just so you know, it’s not a piece of cake when you finish treatment for AML after chemo and stem cell transplant. At one point I took more than 30 pills a day. I’ve cut back some but it is close to that number. After five years they said I was cured, and I’m incredibly grateful for that, but although you may say goodbye to cancer, you end up with long term after effects such as in my case neuropathy and graft vs. host disease, in which the donor’s cell’s attack the host’s, causing all sorts of problems and in my case necessitating two-hour trips to Boston every other week for a treatment to try to make the trouble-making cells calm down. I’m feeling a post in the making…

  • Katie Ruane author
    11 months ago

    Hi Ronnie, sorry things have been bad for you – I appreciate that ending treatment isn’t easy especially after a transplant. The reason I haven’t had a transplant yet is because of GVHD and all that it entails, so I am aware of all the potential complications. I hope your treatment gets better.

  • Ronni Gordon
    11 months ago

    Course you just never know, the GVHD might not be so bad. It’s hard to tell! They do seem to have all sorts of tools to control it.

  • wfmom
    11 months ago

    You are not alone! While my husband is the patient, I have those same feelings as a caregiver. I am grateful for each day we have together, but after 4 1/2 years, I find myself resentful that the rest of our life together will be dictated by chemo, labs, Dr visits. The labrehension and scanxiety each month as well as the unpredictable and unpleasant side effects of chemo will always be dictating our life. My husband has a very rare and aggressive Plasma Cell Leukemia and the fact that he is around after 4 1/2 years is in itself miraculous- but it also means that there is little/no research to guide treatment. In his disease, there isn’t even the term remission!
    After going through transplants and very aggressive chemo, we try to appreciate his “mild” regimen of only 2 constant chemo…but yes, we are envious of those who have experienced cancer and can now say they’re “cured”.

  • Katie Ruane author
    11 months ago

    It must be so hard as a family member – I can’t begin to imagine the impact it all has. I hope it gets as good as it possibly can for you both.

  • ScottChristiansen
    11 months ago

    I don’t think it’s ridiculous at all…not in the slightest. Thank you for sharing this and expressing this quandry so sensitively and eloquently. I find myself with similar feelings when friends of mine with different cancers share their success stories with me. I am envious that they get the all clear. I want that desperately sometimes. Unfortunately that just isn’t in the cards for me…..the aggressive nature of my myeloma has dictated a very aggressive (and unpleasant) treatment plan, culminating in the life long chemo like you. After all I have experienced, it’s just such a let down that there is no true finish line and that ultimately I will relapse. Of course I’m grateful that there are treatment options and more coming on line all the time but still….the seemingly endless nature of it makes my heart ache sometimes. Recognizing this, feeling it fully lets me put it aside and get back to embracing all the things I love and cherish…and lets me celebrate another day with my wife and kids and I remember I will relapse but not today….not today. Anyway, thank you again for putting words to my longing.

  • Katie Ruane author
    11 months ago

    Thank you for your lovely comment and that I have helped to voice how you feel.

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